Care For The Dying: The Church and Hospice

Although she has experienced no miracles
and has not been cured, Donna White no longer contemplates suicide. The
coronary artery disease which already forces the thirty-seven-year-old
woman to breathe from an oxygen machine and inject herself with
morphine, will bring death soon. She is now able to cope with her
condition and her pain.

Donna White once wished for
pills, poison, starvation, anything that would end her torment. She
bought the Hemlock Society's best-selling suicide guide Final Exit,
looked for a doctor who would provide the lethal drugs, and prepared to
end her life. Like most people who face death, White had three fears:
she didn't want to die in pain, she didn't want to die alone, and she
didn't want to bring great financial or emotional cost to her family.
The only solution to these fears that she knew of was suicide. While
searching for a doctor to provide her with the deadly dose, White found
a better solution: hospice.

Like 250,000 other
terminally ill Americans each year, Donna White found in hospice care
the solution to her three driving fears. She would not have to die in
pain, because a hospice nurse who specializes in pain relief joined
with her doctor to find a more effective combination of drugs to
minimize the pain and taught White how to control the amount of drugs
she needed. "Once they got my pain under control, I started thinking
with my heart," White says. She wouldn't have to die alone, because the
hospice concept is built around an integrated support network involving
family, friends, medical and spiritual assistance. Finally, she
wouldn't bring great financial or emotional loss to her family, because
hospice care is considerably less expensive than hospital care, with
whatever costs that are not paid by Medicaid underwritten by outside
sources. The integrated support of family and friends to the dying
process, plus subsequent bereavement counseling, gave White assurance
that the emotional cost would also be lessened by the hospice approach.
[1]

There are now almost 2000
hospices throughout the United States. As the nation debates issues
surrounding health care and costs, euthanasia and assisted suicide, and
the patient's right to autonomy in determining the extent to which
aggressive curative therapy should be administered, only one approach
adequately resolves the issues involved: hospice. As ABC's medical
editor Dr. Timothy Johnson, also an ordained clergyman, says, "We
should be doing far more in our health-care system to develop and
support local hospices. If hospices were geographically and financially
available, I believe that the person considering suicide would prefer
the hospice. In fact, if we did an adequate job of providing such care,
the issue of physician-assisted suicide would largely disappear." [2]
If it is going to faithfully care for the dying, the church must
actively promote and support hospice.

The Present Debate

Modern medical technology
offers many ways of aggressively combating cancer and other terminal
illnesses, yet it often fails to consider the physical, emotional,
spiritual, and financial effects of such treatment on the patient.
Increasingly, patients are seeking to take control back from the
medical technologists, to say when aggressive therapy aimed at a cure
should be suspended. This has resulted in the present surge of interest
in living wills and the durable power of attorney. Through these means,
patients may now declare the extent to which treatment should be
pursued in the attempt to restore them to health or keep them alive.
Patients may now declare when treatment should be halted so that they
may die with dignity and not be kept alive artificially by a connection
to a machine. Based on the patient's advanced directive,
life-sustaining technology may be withheld or withdrawn so that the
disease may take its course and death result.

The desire to reclaim
control over how one dies has led many to the advocacy of active
euthanasia and assisted suicide, in which active measures are taken to
effect death. In active euthanasia, the doctor acts deliberately to
cause death, usually by giving the patient a drug overdose. This
practice was brought to the fore in an anonymous account of a
gynecology resident's decision to inject a young cancer patient with
whom he had no prior acquaintance with a lethal dose of morphine.
Entitled "It's Over, Debbie," this article elicited a storm of
physician outrage for its attack on medical protocol and its violation
of the hallowed canon of medical ethics expressed in the Hippocratic
oath: doctors must not kill. [3] In physician-assisted suicide, the
doctor gives the patient the drugs and counsel necessary to administer
the lethal dose himself. In 1989, physician-assisted suicide was
granted a veneer of medical acceptability when the prestigious New
England Journal of Medicine ran an article in which ten out of twelve
physicians endorsed physician-assisted suicide. [4] That some doctors
see little wrong with killing is becoming more evident. When Dr.
Timothy Quill, a Rochester, New York physician, reported in the New
England Journal of Medicine in 1991 that he had given instructions and
adequate supplies of barbiturates so that Diane, a cancer patient he
had known and treated for years, could and did kill herself, no outcry
occurred such as had followed the publication of "It's Over, Debbie."
In fact, what followed was mostly approval. The fact that Quill had a
prior relationship with his patient in which he offered medical care
with deep concern for the patient's well being seemed to justify his
act to many physicians. [5]

There is increasing support
for euthanasia and assisted suicide in the United States. In November,
1994, Oregon voters passed the so-called Death With Dignity Act, also
known as Measure 16, which permits physicians to prescribe lethal drugs
for terminally ill patients. As is the case with the active euthanasia
permitted in the Netherlands, the Oregon measure contains certain
stipulations which are intended to arrest the possibility of abuse.
This is purportedly ensured by a terminal diagnosis of the patient,
concurrence by a second physician, testing for depression, repeated
requests at specified intervals, self-administration of the dosage, and
family notification. As is the case with the Dutch experience, however,
once on the slippery slope, the safeguards against abuse are regularly
overlooked and even legally permitted so that euthanasia may be foisted
on a patient who is not terminally ill and who has made no such
request. [6]

According to Sherwin
Nuland, M.D., author of the 1994 National Book Award winning How We
Die, 57% of Americans now approve of some form of physician-assisted
suicide. Although he is committed to the concept of euthanasia, Nuland
acknowledges that "euthanasia is killing." His concern about the
"slippery slope" moves him to suggest a series of steps to safeguard
abuse: (1) A request by a patient or family member to end life must be
defensible; they must have examined all the alternatives and not be in
a state of depression treatable by therapy or drugs, (2) If after a
reasonable challenge the doctor is convinced that a request for death
is appropriate, another specialist should be consulted, as well as
experts in the field of palliative care (symptom control and comfort
care), (3) the request for euthanasia be made to a "council of sages"
made up of educators, civic leaders, philosophers, clergy, lawyers, or
other laypeople with "collective wisdom." Nuland concludes, however,
that such requests for death will be minimal when proper care is given
to those who suffer. "In my experience, most people who ask for death
do so because of symptoms or a state of mind that can be relieved by
proper attention and consultation. When the symptoms lessen, these
people no longer want to die." [7]

The Hospice Alternative

Advocates of assisted suicide
and euthanasia seek to help people die in comfort and with dignity. How
dignified is it, however, when a doctor, charged with care and cure,
actively kills his patient or provides the means for the patient to do
it himself? Such an approach must be resisted by those committed to
Holy Scripture, particularly on the basis of the sixth commandment not
to kill. The Westminster Shorter Catechism says, "The Sixth Commandment
requireth all lawful endeavors to preserve our own life, and the life
of others" (Q. 67). The Heidelberg Catechism states that the sixth
commandment requires "that I do not harm myself or willfully expose
myself to danger" and that the Christian "prevent injury" to his
neighbor "as much as we can" (Qs. 105, 107). Scripture's affirmation of
the sanctity of all life and its prohibition against doing injury or
harm to ourselves or to others compels a different approach to helping
people die in comfort and with control and dignity than the misguided
proposals of euthanasia or assisted suicide. The Christian approach
must be that of hospice. The Anglican Bishop Maurice A. P. Wood has
remarked, "A strong supporter of euthanasia once told me that only the
hospice movement, undergirded by the religious stress on the sanctity
of life, could withstand the demands of euthanasia." [8]

Hospice is an approach to
care that is designed to support the physical, psychosocial, and
spiritual needs of people who are terminally ill. It is a
physician-directed, nurse-coordinated, interdisciplinary approach to
patient care available twenty-four hours a day, seven days a week. Its
goal is to allow the dying process to unfold with a minimum of
discomfort and to maintain patient dignity and quality of life to the
end. Care is provided by family and friends at home or in a home-like
setting within a hospital or special facility. The hospice team, which
in addition to the patient's physician and the hospice nurse also
includes social workers, chaplains, and volunteers, addresses the needs
of the patient as well as those of the family members during the
process of death and following its occurrence.

"Hospice" and "hospital"
both come from the Latin word hospes, which meant both host and guest.
This idea of reciprocity of care in community is central to the hospice
idea and markedly distinguishes it from the modern hospital. "From
hospes to hospital, the psychology has changed from one of love to one
of war, and in the psychology of war, force is imperative. Therefore we
arrive at the strange, new embrace that pins the inert body of a man or
woman, terminally ill, to a machine that forces that person's body to
breathe without even knowing its name." [9] The aggressive approach of
the hospital construes the disease as an enemy to be defeated, while
the physical, emotional, and financial pain that results from this
aggressive treatment on the patient is often regarded, in military
euphemism, as "collateral damage." With treatment options for cancer
and other terminally ill patients greater than ever, the scope of the
modern hospital is almost exclusively curative and all the weapons at
its technological disposal are launched in the effort to destroy the
enemy of health, disease. While the treatment of those who can be cured
has vastly improved in the twentieth century, the way the terminally
ill are cared for has grown steadily worse.

Doctors are simply not
adequately prepared for treating the terminally ill. "It is regrettably
true that the majority of physicians in the United States have never
been taught the techniques of treating the physical, psychological or
emotional symptoms of terminal disease." [10] Medical students often
have but one course in pharmacology and drug therapy. They fail to
appreciate the pain of their patients and do not treat that pain
effectively. This is only now being rectified. In December, 1993 the
American Medical Association, as part of its new resolution against
euthanasia and assisted suicide, resolved to promote better pain
control for dying patients. Early in 1994 the U.S. Agency for Health
Care Policy and Research issued new guidelines on "Management of Cancer
Pain," admitting that while cancer pain can be managed effectively
through relatively simple means in up to 90% of the eight million
Americans who have cancer, pain associated with cancer is frequently
undertreated. Asserting that drug therapy is the cornerstone of cancer
pain management, the guidelines say "an essential principle in using
medications to manage cancer pain is to individualize the regimen to
the patient." [11] These and similar recommendations which are now
being urged upon oncologists and others treating the terminally ill
have been known to hospice physicians and nurses for decades.

Chronic pain can render life
meaningless and enhance the desire for the end. Some Christians think
the inability to find meaning in pain is a major reason for the
promotion of assisted suicide in contemporary society. "The most
compelling reason why physician-assisted suicide is becoming a reality
is that our postmodern, technological culture cannot find meaning in
suffering. The patient has no framework for dealing with pain and
hopelessness and therefore struggles for answers" [12] These Christians
are right to emphasize the need for faith in responding to pain, but
their well-intended remarks can often sound callous to those who suffer
unbearably. "Anyone who has worked with cancer or AIDS patients in pain
realizes what nonsense it is to say that excruciating pain from a
terminal illness has any redeeming value. This kind of argument from
the opponents of euthanasia only strengthens the convictions of Hemlock
Society supporters." [13]

The pain of cancer is
particularly meaningless, serving no useful purpose, such as warning
the sufferer of imminent harm. Unless appropriately treated, cancer
pain usually grows more rather than less severe. Without adequate
treatment, it frequently expands to occupy a patient's whole attention
and isolates him or her from the world around. When this occurs, the
patient may believe that life is no longer worth living. One survey
reported that 69% of cancer patients would consider committing suicide
if their pain was not adequately treated. [14]

The church's responsibility
is to care for the dying, not simply to preach the redemptive value of
suffering. It can do this through hospice.

The hospice approach is not
concerned with aggressive cure of the disease, but with palliative care
of the patient. Those who want aggressive efforts undertaken to cure
their disease are not candidates for hospice care. Many people who are
seriously ill and their doctors continue to search for new treatments
even when it is apparent that nothing will arrest the spread of the
disease. Hospice is for those who recognize that they are terminally
ill and who desire no further debilitation from radical attempts at a
cure. Medication is kept to a minimum and procedures such as IVs,
transfusions, surgery, chemotherapy or radiation therapy are not used
except for possible short-term palliative therapy for pain relief.
Hospice is for those who, by their doctor's best evaluation, have a
limited time left to live, usually six months or less. A patient can be
considered to be irretrievably in the dying process if: (1) there is no
treatment that will significantly alter the patient's disease, (2) the
disease is progressive, (3) the goals are short, (4) the intent is not
to prolong life, and even more to the point, the intent is not to
prolong dying. [15] Hospice is for those who desire that their
remaining days be spent in the company of family and friends, alert and
with a minimum of pain and medical intervention.

Hospice is not a place, but
an integrated program of caring. Hospice care can occur in resident
facilities such as specialized sections of hospitals and separate
buildings or it can occur at home. From its beginning in New Haven,
Connecticut in 1974, hospice in the United States has emphasized
in-home care. [16] Regardless of whether the hospice program is done at
home or in a resident facility, it is completely unlike the sterility
of the hospital setting. Hospice endeavors to approximate the normalcy
of life as much as possible, since it views death as a normal part of
life, not something to be hidden. As such, the normal life setting of
the patient is encouraged, with unrestricted access to family, friends,
and pets, all of which contribute to making life at the end as
meaningful and enjoyable as possible. If depression or other
circumstances have caused the patient to let his surroundings
deteriorate, a family member or volunteer will clean up and help to
reestablish a dignified environment.

Approximately 70% of the
people in this country will die in an institution, removed from family,
friends, intimate surroundings, and everything that has made their
lives valuable. It was not, of course, always that way. Before modern
medical advances, the family doctor used to come to the home of the
dying patient and, with clergy and loved ones close at hand, provide
care in the last days of life. Healing does not always mean curing.
Sometimes it means helping the patient to prepare for death and to
enjoy the last days of his life. Dame Cicely Saunders describes the
archetypal hospice philosophy of St. Christopher's in England:

Healing a person does not
always mean curing a disease. Sometimes healing means learning to care
for others, finding a new wholeness as a family--being reconciled. Or
it can mean easing the pain of dying or allowing someone to die when
the time comes. There is a difference between prolonging life and
prolonging the act of dying until the patient lives a travesty of life.
At St. Christopher's, we try to offer people space in which to be
themselves. We hold fast, but with open hands; because sometimes the
most import part of loving can be knowing how and when to let go. [17]

While utilizing the latest
advances in medical understanding to control pain and provide comfort
in its palliative care, hospice returns to the holistic and integrated
approach to death and dying of days gone by. Surveys report that 90% of
Americans would prefer to die at home, in familiar surroundings, with
family and friends nearby. [18] Hospice ensures that they can spend
their final days meaningfully, virtually free from pain and in an
environment and amongst people they know and love.

Hospice medicine
successfully controls the symptoms of the disease so the patient feels
little or no pain right up to the end. It provides regular nurse's
visits to check on how the drug therapy is working and provides
instruction to the patient and family on self-administration of dosages
to manage pain and control nausea and vomiting. It provides nutritional
counseling and evaluation of eating habits to enhance the patient's
sense of well-being. Occupational therapy, physical therapy, and speech
therapy are available, as is emotional and psychological counseling and
support. Spiritual support and guidance is available, as virtually all
hospices have chaplains who regularly visit the patient and assess
needs. Home support services by hospice volunteers are also available,
such as doing shopping for the family, providing transportation for the
patient, and, perhaps most importantly, companionship, just being there
to share with the patient for a hour or two a week. Volunteers also
provide respite care for periodic relief of family members from the
stresses of caring for the patient at home. Legal and financial advice
are also available in preparation for the death of the loved one.
Finally, hospice workers become so integrated into the family of the
patient that they remain with them in and through the death of the
loved one, providing bereavement care for the survivors following the
time of death. Hospice thus provides holistic care for the terminally
ill patient and his family so that the process of death may be one of
dignity, love, and meaning for all involved.

The Church and Hospice

Hospice is a concept whose
time has come, though it is hardly new. The roots of hospice go back to
the first century church, when the hospitium served as a resting place
for the hospes, the guest on his way to and from a pilgrimage. Fabiola,
a disciple of St. Jerome, founded a hospitium in Rome nearly two
thousand years ago to care for pilgrims returning from Africa. Other
such way stations for the care of the needy traveler are known, such as
the hospice of Turmanin in Syria in 475, but perhaps the most
noteworthy is the care for the sick provided by the Knights
Hospitallers of the Order of St. John in the twelfth century. Their
statutes for the care of the sick call attention to the hospitality
that was due to the guest (hospes). Hospitality and care for the sick
pilgrim and weary traveler, whatever his worldly status, were central
to these precursors to the modern hospice. Founded in the Christian
conviction that all life has sanctity and dignity, these servants of
God ministered faithfully to all in need as unto the Lord Jesus
himself.

The first "hospice"
so-called was founded in the nineteenth century by Mary Aikenhead and
the Irish Sisters of Charity in Dublin. [19] Since then, particularly
through the impetus provided by Dame Cicely Saunders, a devout
Christian and founder of St. Christopher's hospice in England in 1967,
hospices have arisen in all fifty states of the United States and in
many foreign countries. Some remain church-based, such as Malachi House
in Cleveland, [20] while many others are community-based care
facilities founded out of a broader constituency but retaining the
religious and spiritual aspect foundational to the holistic hospice
concept. Often it has been clergy and concerned Christian laypeople who
have been instrumental in forming hospice care in their area. This was
the case with the formation of the first American hospice in New Haven,
Connecticut in 1974 and has also been true as the hospice concept has
taken hold in foreign countries, such as Japan, Taiwan, India, Korea,
Singapore, and Hong Kong. [21] This is not always easy to accomplish,
particularly since some cultures, such as the Japanese, have
traditionally avoided discussion of the issue of death and have had
nothing to do with the dying. [22] The holistic, integrated approach to
death and dying that is foundational to hospice should, however,
actually have greater appeal to non-Western cultures where community is
emphasized over individualism and integration is accented over
specialization and compartmentalization in thinking.

Hospice does provide a new
opportunity for ministry by clergy and laity. [23] Clergy, of course,
can play a vital role in ministering the love and grace of Christ to
those who are terminally ill and in need of the hope and assurance that
only the gospel can bring. They can do this not only among their own
parishioners who are terminally ill, but among those in the broader
community who are in a hospice program through service as a hospice
chaplain. [24] Clergy can also be valuable in ministering to hospice
workers themselves, providing them with counsel to relieve stress. [25]
George Gates warns that pastoral counselors must assert their rightful
role in the hospice program or it may well be relegated to another. "A
risk exists that if pastoral counselors do not begin to assume their
team role, they may relinquish this opportunity to other disciplines."
[26] Even if they do not initially intend to become active in hospice,
clergy can improve their ability to minister to the dying by taking the
fifteen to twenty hours of volunteer hospice training that local
hospices regularly provide. Certainly, clergy cannot afford to be
unaware of what hospice is and how it can benefit the dying. It is,
therefore, incumbent upon seminaries to include hospice in preparing
students for ministry in church and society. [27] Continuing education
of ministers must also include addressing the significance of hospice.
Lay people also have a key role to play in hospice home support. They
are needed to be a friend to the terminally ill patient and his family,
to spend an hour or two a week just being a companion, and also to do
helpful errands such as providing transportation, doing shopping, and
perhaps occasional respite care. The layperson may feel initial
reluctance to embrace this ministry based on a sense of inadequacy in
working with the dying. Many of these feelings of reluctance are
assuaged by the volunteer training that hospices require for all who
work in the program. Lay people should also be aware that clergy also
sometimes feel a sense of inadequacy in dealing with the dying. All who
do work with the dying come to realize, however, that it is far less a
matter of what one says as it is of what one is, a person who cares and
makes that care evident in being there to help however he or she can.
Those who do hospice work are those with some personal commitment to
spiritual values and who enjoy helping and caring for others. While it
is probably not for everyone, those who feel called to such work will
find that they receive greater blessings from their work and their
patients than they themselves give.

The Future of Hospice

Hospice is very likely the
wave of the future in health care. "Hospice should be at the top of the
agenda for health care reform in this country." [28] Health care
providers are increasingly recognizing the benefits of hospice care.

Hospice care is generally
recognized to be less expensive than hospital care. While the estimates
of 30-60% savings compared to hospitalization have been questioned by
some, [29] there appears to be no doubt that hospice does offer a
cheaper alternative to radical and aggressive in-patient therapy. [30]
Patient stays in the hospice program average 59 days with no expensive
invasive procedures utilized except as needed for short-term palliative
care. Not only does such an approach entail far less cost, but it also
reduces the difficult decisions that sometimes have to be made
regarding the utilization of invasive procedures of questionable worth.
Cundiff says most people do not want artificial hydration and nutrition
if they are terminally ill, since it induces significant pain. [31]

The public dialogue about
whether nutrition and hydration must be provided at the end of life has
enhanced the ability of hospice care providers to ensure patient
comfort. Such measures now are generally assessed just as are any other
medical treatment measures, with the benefits and burdens weighed
relative to the patient's goals and values. Conventional replacement
hydration commonly leads to oral and pulmonary secretions in excess of
the dying patient's ability to handle them. Thus, forgoing the
provision of nutrition or hydration by other than the oral route
ordinarily enhances the patient's comfort during the last few days of
life. [32]

By forgoing invasive means,
hospice thus enhances the quality of the dying patient's last days and
obviates troublesome ethical questions surrounding the use or
withholding of artificial hydration and nutrition.

With the growing number of
patients with end-stage chronic illness, including AIDS, seeking
hospice services, average hospice costs will escalate. This is because
AIDS patients may still benefit from costly medications and require
higher maintenance care for longer and more unpredictable periods.
Symptom control is a common and severe problem that remains difficult
to improve in HIV/AIDS patients. [33] Thus, although 84% of hospice
patients have been diagnosed with cancer, AIDS will continue to require
greater attention among hospice care givers. It is generally agreed
that AIDS does not fit the cancer model of hospice care and requires a
different setup which is more costly and less definite in terms of
beginning and procedure. [34] Psychosocial support is notably less
among neighbors of AIDS patients and work among AIDS patients is more
time consuming and stressful for hospice staff. [35] Notwithstanding,
AIDS patients are more satisfied with hospice care than non-hospice
care. [36]

Thus, although there are
problems that remain to be worked out with hospice care as it ministers
to those with AIDS, endeavors to be more responsive to those with other
terminal illnesses, and seeks fiscal integrity and aims at the greatest
accessibility, it seems clear that hospice is vital to future health
care. The church must promote the hospice approach by reclaiming its
historic role in caring for the dying and their families. It can do
this by providing information on hospice and actively engaging in
hospice support, both financially and through volunteerism. As the
church engages in hospice work by ministering to those who are dying
and their families, it will help to render moot the case that is made
for euthanasia and assisted suicide. In so doing, it will demonstrate
that the sanctity of life and the dignity of each human being are
rooted in faithful commitment to God, who cares for the dying through
his church and calls them into the true community that is consummately
to be found in Jesus Christ.

[29] E. J. Emanuel and L. L.
Emanuel ("The Economics of Dying: The Illusion of Cost Savings at the
End of Life," The New England Journal of Medicine 330 [February 24,
1994], pp. 540-45) think the amount to be saved is at most 3.3% off the
total national health care expenditure.

Categories:

Tags:

There are too many errors in this book for unsophisticated readers. McLaren’s book has value only to readers who recognize the mistakes but are willing to learn about a position that springs from ideology and a theological framework. For me, the emerging church movement is enough to consider by itself without flawed economics intertwined